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A: My association
Deals with a very rare disease
there are only nine known cases all over the world
Only one case in Italy, my son Alex that is four years old
This disease is connected with X-chromosome
and all ist variations
Q: what are your association's goals?
A: Our association's main purpose is to spread the knowledge of this disease
because it's not easy to find information about it. Everything you can find on the web is what we found and published
and we'll try to spread among doctors the knowledge of this new disease
that, if early diagnosed, gives the children a good survival opportunity
otherwise it could be deadly
Q: talking about the congress, why rare disease are to be thought as an emergency?
A: Because they're rare, so rare, much more that they are presently described
and most of them are still unknown
no one really knows what will be
as it was with my baby that has been a discovery for everyone
Q: And what about the research?
because, unfortunately, the research is aimed to more known diseases
and it could be correct, because public founds are so scarce
with our association we try to support the research on this topic
among so many projects of our association we also want to do it.
to support the research, to find a doctor that could be available
to put his own experience
to help those children, that even if are only 9 cases
they have right to be treated
they have right to hope for a better future
A: We try to sponsor the research through our association